NIH looks to diversify precision medicine data with new community partners

National Institutes of Health sign
A new partnership with four groups will help NIH collect data on groups that have often been left behind in medical research.

The National Institutes of Health (NIH) has added four new community partners to its precision medicine research campaign representing populations that have historically faced significant disparities in medical care.

As part of an effort to gather health data from at least 1 million people living in the United States through its All of Us Research Program, NIH awarded $1.7 million to four groups representing economically-disadvantaged senior citizens, Hispanics and Latinos, African Americans and LGBT communities.

“This first-of-its-kind program seeks to include people from all walks of life, and these community partner awardees were selected to help achieve that goal,” Eric Dishman, director of All of Us at NIH said in an announcement.

Hispanics, blacks and LGBT individuals often face significant gaps in medical care. Recent research shows black patients enrolled in Medicare Advantage plans were 64% more likely to be readmitted than their white counterparts. Meanwhile, transgender patients are less likely to seek preventative care.

RELATED: Patient portals, data management integral to engaging LGBT patients

LGBT data disparities have been a particular concern. EHR vendors and providers are still struggling to incorporate gender identity data into medical records, despite requirements that kick in on Jan. 1. There is also a growing concern that artificial intelligence could inadvertently exacerbate existing health disparities simply because there is less data for disadvantaged populations.

NIH aims to close some of those gaps by partnering with four organizations—FiftyForward, the National Alliance for Hispanic Health, Delta Research and Education Foundation and the San Francisco General Hospital Foundation—that have “deep, trusted relationships” with communities that have “traditionally been underrepresented in biomedical research,” said All of Us Chief Engagement Officer Dara Richardson-Heron, M.D.

“We’re committed to ensuring that participant perspectives are considered throughout every aspect of the program,” she added.

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